By Cory Mull - MileSplit USA
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"Follow your dreams. Don't let other people pull you down." -- Jonathan Schomaker
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When Jonathan Schomaker was six months old, doctors saw the big hole in his brain and came to the only conclusion that they knew at the time, telling his mother and father that he wouldn't be able to have a normal life.
And maybe that's true. Jonathan Schomaker hasn't had a normal life
It's been more than that.
Some 15 years later, he's achieving things no one with his extremely rare diagnosis -- Pontocerebellar Hypoplasia -- have ever done before.
Not only does Jonathan, 15, attend Leavitt Area High School, where his father, Jon, says he's "mainstream in just about everything," but he's been racing with the school's cross country program since the seventh-grade, competing on the same courses that every other able-bodied athletes have been on.
He's constantly testing the limits his body can take him.
"No matter how scared, or if you are in a wheelchair or if you have autism, or no matter who you are, follow your dreams," Jonathan told his local news station, WMTW, this month. "Don't let other people pull you down."
On Saturday, the high school sophomore will end his cross country season much in the way it started: On the starting line and at the finish. He will race on a modified course at the Maine Class B State Cross Country Championships at Twin Brook Recreation Park in Cumberland.
"It's important to me because A, I want to race," Jonathan told his local newspaper after his Regional Championship. "B, I wanted to open doors for other wheelchair athletes. C, My team's like my family."
While he's never obliged to society's expectations of him, there are realities for Jonathan, too. His neurological diagnosis -- he's missing approximately 20-percent of his brain -- has put him in a wheelchair, and the absence of a cerebellum, which ultimately coordinates balance, posture, coordination and speech, has impacted the way he's fit in and adapted to every day life. His father, Jon, says his diagnosis is symptomatic of cerebral palsy.
And yet, Jonathan's lived fully. He's never let limits define him. Whether it's studying YouTube videos on ways to fix cars -- he will never get the chance to drive on his own -- or feeling the rush of ocean water on his feet during family getaways, he's always sought new experiences.
"I live in awe of this kid every day," Jon said. "I can't explain it. He works so incredibly hard to do everything he does. The harder you work him, the more he thinks it's funny. He keeps going."
It's simple things -- which some teenagers might take for granted -- that drive Jonathan. Sports is one.
While his two older siblings weren't huge cross country fans, Jonathan was attracted to it from the very beginning. He participated in his first race in the seventh-grade, when he took his Renegade all-terrain chair and its 24-inch mountain bike wheels and tires on to a course for the first time.
At first, he was just happy to be out there with the rest of his teammates, happy to be struggling.
During his freshman year at Leavitt, he participated in six cross country races. But then, when the team continued on through the postseason, Jonathan began to ask the question. Why am I being excluded? His appeal to compete beyond the regular season was denied.
"He doesn't see a limitation on what he can do," Jon said. "If everyone is doing something, he wants to do it, too."
Jonathan and his father wanted to change the matter of exclusion, so they pressed harder this fall, urging the Maine Principal's Association to add a wheelchair division. That in itself would have been revelatory -- starting a new division entirely -- but Jon said he did tireless research to figure out whether other states had one for cross country. Iowa and Washington, for instance, had wheelchair divisions, he said, but those were on pavement and let athletes use slick racing chairs. Jonathan was in a rig.
No division or championships in cross country existed in the way Jonathan had been participating over the last few years. And so that may have been the initial reason why the MPA, citing consultations with the Paralympic association in New England and the NFHS, among others, denied that plea in September. It was a safety concern, they wrote, as Maine's regional and state courses were looped.
"Our coaches and athletic directors kept saying, 'Hey, we need to figure this out. We have a regional meet in a few days.' ...they were trying to pin him down as a safety concern on the course."
"His entire life, he hasn't fit the mold," Jon said. "He breaks barriers every day."
But then, after some smart work pushing his story out to the press, and public sentiment -- Jon said he received letters from as far as Texas, North Dakota and Florida -- objected, the association changed course. Jonathan successfully won the right to be at regionals.
In doing so, his coaches and school's administration agreed to a compromise. While Jonathan ultimately did not race the same course as his teammates, he did get the chance to start with them, and he was able to complete on a modified course, which was an entirely separate race. The MPA also created a separate wheelchair division, which could include any wheelchair athletes from member schools.
During the regional race, his father was with him every step, encouraging and guiding him while a course marshal oversaw the entire effort. He finished, in just over 40 minutes.
"We knew this would set precedent because no one was doing this," Jon said. "But as it went along, it became clear to us it was much more important that the right precedent was being set, and not just for him. We wanted to help set up a wheelchair division, so that others could potentially follow in the future."
It was another small step for Jonathan, and yet another moment where he broke new ground.
"His entire life, he hasn't fit the mold," Jon said. "He breaks barriers every day."
